From Fear to Fighter - a Column by Brandi Lewis

Setting New Year’s goals helps me better manage my rare disorders

The new year is upon us, which means more opportunities to accomplish bigger goals in life. Making it to another year with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH) reminds me of my resilience and drive to conquer what others would deem impossible. Because you’re reading this, you’ve…

4 steps I’ve taken for getting through the holidays with PNH

The holidays are filled with joy, happiness, love, togetherness, and so many warm, fuzzy feelings. But I wasn’t feeling any of them at the beginning of my health journey and had a hard time getting into the holiday spirit. I didn’t feel happy, joyful, or full of life. Instead, I…

Sharing my PNH story has led to more opportunities to share

Your story is your superpower! I’ve heard this statement so many times, but didn’t fully understand it until I began sharing my own story. Since 2008, I’ve battled two blood disorders: aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH). In the beginning, I was focused only on my health so…

I want more diversity among bone marrow transplant donors

After I was diagnosed with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), I was told to consider a bone marrow transplant. My doctor quickly pointed out, however, that there weren’t many minority donors available. According to the National Marrow Donor Program’s Be The Match registry, you’re…

The unique challenges faced by young adults with chronic illness

“What is it like to be diagnosed with life-threatening blood disorders as a young adult?” When someone asks me this question, my body language answers as I sigh deeply, tense my shoulders, pop my fingers, and fidget anxiously. It’s a loaded question with many answers. Being a young adult…